About me

PROFILE:

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, April 17, 2015

It takes courage to film one’s self and
allow the world to see exactly what it’s like to live with Parkinson’s disease.
One spirited young man, Kendall Lay, has done exactly this. He usually makes short
films about other patients, with the intention of lifting spirits by encouraging
and showing support to fellow sufferers. However with Parkinson’s Awareness
Month in mind, one of his recent films portrays himself at various times of the
day exhibiting Parkinson’s, leaving no doubt or confusion as to what happens when
medications are working and when they are not.

This short film was not meant to dishearten anyone,
but plainly shows the simple truth, in an attempt to educate and bring further awareness
to the debilitating symptoms and side effects experienced by those living with
Parkinson’s.

Even some members of my own family don’t
understand why I appear almost unaffected at times, and on occasion can witness
the harsh realities of the disease. Caught at the right time of day, my
medications are working and I can function to a fair degree, but catch me in an
“off” moment, when the medications have ceased to work, and you’ll hardly
recognise me. Understandably confusing to those who know little or nothing
about Parkinson’s, it can appear that one minute you have a debilitating
disease and the next it has miraculously disappeared.

Worrying about when I'm going to next freeze is a waste of energy, but nonetheless, it is in the back of my mind and perhaps yours too. Ever frozen in the supermarket and left wondering if anyone noticed? Have a read about my escapade this week in The Huffington Post.

Friday, April 10, 2015

How are you going to mark Parkinson’s
Awareness Day this year? Are we doing all we can as a community? There is no
room for complacency. Now is the time to stand up and be counted for if we don’t,
who will speak on our behalf? You may be wondering what you can do, and how you
can possibly make a difference. Every person can contribute something, and by pulling
resources and joining together, with the common goal of finding a cure, this is
surely our best way forward.

Speaking from the heart and personal
experience, Lisa Vanderburg, who doesn’t sugar coat anything, like myself continues
to campaign, and came up with a powerful slogan:

Friday, April 3, 2015

As I sit here in the middle of the night,
with fingers poised above the keyboard, I wonder who you are that reads my
blog? Are you a patient like myself? Or a caregiver? Or did you stumble across
my site by accident? Whoever you are, “Welcome”. Pull up a chair and make
yourself comfortable, forI’m about to discuss
what most people consider an uncomfortable subject to air. I have never been
one for shying away from taboo matters, and so with no further ado, let’s jump
straight in!

We’ve all heard of the side effects
caused by some Parkinson’s medications that result in obsessive compulsive
behaviour, mainly associated with gambling, sexual activity and shopping. I
have personally experienced the “shopping phenomena” which was so out of
character, my family and I fortunately realised very quickly what was
happening. Once a problem is identified, a solution can be sought.

I came across an article written by Marc
Jaffe published in the New York Times, “Finding Equilibrium in SeesawingLibidos”, which is about the sensitive topic of sexuality and Parkinson’s
disease. I applaud Marc and Karen for their courage in addressing openly a very
difficult and personal topic, sharing with us all their experience, allowing
important information to be brought out into the open. I am sure Marc and Karen
Jaffe are far from alone.

Bringing issues like this
into the open, we must cast aside any shame or stigma, so that those suffering
similar side effects know these are problems that need addressing, and cannot
be swept under the rug. Staying informed and receiving support from family,
friends and your healthcare providers, is vital when living with any serious
disease.
I think we’d
all agree, there’s no place like home! Take a look at my latest article inThe Huffington Post.